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Listen to SCN2A Insights to keep up to date with the latest research in SCN2A, genetic epilepsy and rare genetic disorders. Hosted by Ms Kris Pierce, RARE Global Advocacy Leadership Council member, and Dr David Cunnington, parents of Will, who has SCN2A.
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Let’s explore self care resources together and have fun doing it. We have to take care of ourselves before we can care for others. Support this podcast: https://podcasters.spotify.com/pod/show/scnted-in-the-city/support
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Mali Phonpadith is an Entrepreneur, Author, Speaker, Podcaster, Messaging and Marketing Strategist and Executive Producer of Tea with Mali TV Show. Mali is the CEO & Founder of the SOAR Community Network, a Marketing & Technology Consulting Firm for Legacy Driven Businesses. http://soarcommunitynetwork.com. SOAR Community Network (SCN)Podcast will feature weekly episodes that provide interviews with legacy driven leaders from across the globe. We share inspiration, reflections, interviews, a ...
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Transitioning children with complex health needs such as those with SCN2A or other developmental epileptic encephalopathies is challenging. Dr Danielle Andrade from University of Toronto has been instrumental in producing a number of transition guides and her ongoing research hopes to help further improve the process of transition. People aged 18 y…
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Karen Kendra Holmes works for the Federal Government as a Safety Officer. She is a strong advocate for the Transgender Community speaking around the country from military, police, fire, medical field, university, etc. Karen is volunteering with the Department of Justice / Community Relations Department as a Subject Matter Expert going around the co…
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Advocating for people with epilepsy and increasing epilepsy awareness are passions for Torie Robinson, founder and CEO of Epilepsy Sparks. Torie's lived experience and experience as an advocate and spokesperson gives her great insights in to care needs for people with epilepsy. In this insightful and personal conversation, Kris and Torie talk about…
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SCN Change Agent Interview Series - Meet Darnley HodgeDarnley R. Hodge Jr., is an award winning photojournalist and video editor with more than twenty years of broadcast and production experience. He holds an M.A. in Producing for Film and Video from American University, and a B.S. in Mass Communications from Virginia Commonwealth University. His p…
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SCN Change Agent Interview Series - Meet Dana HutsonDana Hutson is Founder of Cancer Champions, LLC helping individuals and families control the chaos of a cancer diagnosis. She compassionately consults, educates and facilitates for individuals and their loved ones as they navigate a complicated healthcare system empowering them to make life-alteri…
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SCN Change Agent Interview Series - Meet Dennis Pitocco.DENNIS PITOCCO is Founder & CEO & Reimaginator of 360° Nation, encompassing a wide range of multimedia enterprises, including BizCatalyst 360° —an award-winning global media digest; 360° Nation Studios —dedicated to reaching across the world in an effort to capture, produce, and deliver positi…
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Shreyaa Venkat is the co-founder and CEO of NEST4US and a sophomore at Georgetown University pursuing Global Health studies. Eighteen-year-old Shreyaa already has 8+ years of volunteer service under her belt and has spent over 2,000 hours giving back to the community. As a Points of Light Youth Network Leader, Giving Tuesday Spark Chapter Head, DoS…
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SCN Change Agent Interview Series - Meet Ina GjikondiIna Gjikondi, PCC, MPS, MAFounder & Faculty Director, e-Co Leadership CoachingI am a teacher, speaker, mother, alchemist, innovator, poet, modern mystic and co-curator of creative learning experiences that expand consciousness with the goal of One Shared Humanity.I serve as the Director of Execut…
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SCN Change Agent Interview Series - Meet Juan Carlos Ortiz GiróJuan C. Ortiz-Giró is a State Administrator at Team Rubicon USA, where Juan, trains new members and leads the organization in Puerto Rico, this includes the coordination of programs and submission of projects in the island.Juan is a USCG veteran with a bachelor’s degree in Public Healt…
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SCN Change Agent Interview Series - Meet Dr. Foojan ZeineDr. Foojan Zeine is an International Speaker, Psychotherapist, Life Coach, and the Author of Life Reset – The Awareness Path to Create the life You Want. She has a Doctorate in Clinical Psychology, and is a licensed Marriage and Family Therapist. She practices in Beverly Hills, Irvine & Woodl…
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SCN Change Agent Interview Series - Meet Myron Radio.Myron J. Radio is a five-time author and President of The R Group, a consortium of seasoned professionals who specialize in Leadership and Organizational – Change, Transitions and Transformations.Myron is recognized as an energetic speaker, facilitator, team builder and executive coach with over …
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SCN Change Agent Interview Series - Meet Claudia KörblerClaudia Körbler is a Policy Development and Outreach Specialist at the United Nations in Washington, D.C. Claudia’s passion of eradication of hunger, elimination of poverty and creating social impact speaks through her engagements. Before joining the FAO, she worked at the World Bank Group a…
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SCN Change Agent Interview Series - Meet Katherine WhiteKatherine White is a feminist trailblazer and a proud Ohio State Buckeye alumna. Sincethe first Women’s March, Katherine has become an activist in the grassroots movementin Virginia. She is fighting for change by electing democrats to office, especially womenand minorities. She co-founded an o…
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SCN Change Agent Interview Series - Meet Connie St. JohnConnie St. John is President of the St. John Consulting Group and CEO of No Weapon Productions (NWP), a company that specializes in family-friendly film and television programming, along with stage plays and other live events that feature no gratuitous sex, profanity or violence. Through both …
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SCN Change Agent Interview Series - Meet Kate Maloney, PhD.Kate Maloney, PhD is the CEO & Executive Producer of WeRiseUP The Movie and Movement.The SC Nebula is a global online (and offline - Washington, DC area) hub where conscious leaders from corporate, spiritual, nonprofit and civic groups can connect, collaborate and create more social impact …
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SCN Change Agent Interview Series - Meet Phil Kreutzer.Phil Kreutzer is currently traveling the world on a “sanity sabbatical” where he is researching modalities aimed at raising consciousness. He is a certified yoga instructor and training to become a mindfulness meditation coach.You can follow Phil on Instagram: @_philter_The SC Nebula is a globa…
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SCN Change Agent Interview Series - Meet Darnley HodgeDarnley R. Hodge Jr., is an award winning photojournalist and video editor with more than twenty years of broadcast and production experience. He holds an M.A. in Producing for Film and Video from American University, and a B.S. in Mass Communications from Virginia Commonwealth University. His p…
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SCN Change Agent Interview Series - Meet Leo Tucker.Leo Tucker, CLU, Managing Partner - Northwestern Mutual27 years ago, Leo Tucker began his career with Northwestern Mutual. He’s earned numerous honors including the prestigious Million Dollar Round Table including Top of the Table. Early in his career, he quickly distinguished himself as a leader …
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Beth was thrilled to join the Flaherty Family Foundation (FFF) as the first executive director in September of 2015. The Flaherty Family Foundation provides high school college prep scholarships to high potential students with economic need. Flaherty has expanded and formalized the Scholarship Opportunity from 11 Flaherty Scholars at three high sch…
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SCN Change Agent Interview Series - Meet Rev. Sylvia Sumter.Reverend Sylvia E. Sumter is currently the Senior Minister of Unity of Washington, and has served in this position since 1991. DC. Prior to her tenure in Washington, DC, she served as the Chairperson of Communication Studies and Skills Department for the Unity School of Religious Studies, …
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Ellen Bryan is a television host and motivational speaker. Every morning, she helps people in Washington, D.C. start their day on WUSA 9’s Wake Up Washington, Get Up DC and Great Day Washington. Ellen also hosts an online series called Minute Motivation, where she and her guests inspire others to find their purpose and passion. A girl from the Midw…
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Hetal Jani is a first generation South Asian American and New York City native, which has colored her experience as an educator and her interest in how culture, society, and interpersonal relationships affect an individual’s development. Ms. Jani has over 15 years of experience as an educator and has helped hundreds of students navigate their acade…
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SCN Change Agent Interview Series - Meet Bill Protzmann.His volunteer work has included Board positions with Guitars for Vets and the San Diego Veterans Coalition. He has been instrumental in connecting thousands of military service members and Veterans with honor tickets to the largest healing music organization in his town: The San Diego Symphony…
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SCN Change Agent Interview Series - Meet Niphasone Souphom.The SC Nebula is a global online (and offline - Washington, DC area) hub where conscious leaders from corporate, spiritual, nonprofit and civic groups can connect, collaborate and create more social impact together.Interested in becoming a SC Nebula Member? info@soarcommunitynetwork.comNomi…
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SCN Change Agent Interview Series - Meet Carol SanfordCarol Sanford is a consistently recognized thought leader working side by side with Fortune 500 and new economy executives in designing and leading systemic business change and design. Through her university and in-house educational offerings, global speaking platforms, multi-award winning books…
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SCN Change Agent Interview Series - Meet Dr. Assegid Habtewold.Dr. Assegid Habtewold is the CEO of Success Pathways and the Founder of PRO Leadership Global. Assegid is also the host of Pick Yourself Up show, which airs on Channel 16. He wrote five books. The title of his latest book is "Unchain Your Greatness: Explore, Enact, Endure, and Emancipat…
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SCN Change Agent Interview Series - Meet {Dr. Daniel Ramos Cruz}.We interview The Historian for the City of Bayamón, Dr. Daniel Ramos Cruz. Daniel is originally from Bayamón where he attended the primary and secondary levels in the public education system. He then completed a Bachelor of Secondary Education in History at the Interamerican Universit…
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SCN Change Agent Interview Series - Meet Miria VargheseMiria is Founder and Executive Director of ArtPropel, an organization that provides arts based team-building, creativity and wellness workshops for businesses in Virginia, Maryland and DC. From Percussion and Painting to Cooking and Improv, ArtPropel has a program to inspire and transform every…
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SCN Change Agent Interview Series - Meet Dr. Elizabeth WachiraDr. Elizabeth Wachira is a young leader, mentor and world changer with a focus on informing and promoting social justice efforts. Dr. Wachira is an Assistant Professor at Texas A&M University – Commerce and director of the Public Health program in the Health & Human Performance departmen…
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SCN Change Agent Interview Series - Meet Paul RicePaul Rice is Founder & CEO of Fair Trade USA, the internationally-acclaimed social enterprise and leading certifier of Fair Trade products in North America. He launched the award-winning nonprofit organization in 1998 after spending 11 years organizing farmers in the highlands of Nicaragua. There he…
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Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment beyond just measuring seizures. To help understand what outcome measures are and why they are important to spoke to Dr Jenny Downs, Program Head of Disability Research at the Telethon Kids Institute in Perth. You can listen to and su…
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Ciitizen's mission is to empower seven billion citizens across the planet with all of their health data. When you control your data, you have more options. For your own care, and to advance research for others. Observational Studies and real-world evidence are critical to the drug development process. Ciitizen has developed a new method to make thi…
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Children, adolescents and adults with autism can have significant sleep problems. Trouble getting to sleep, waking at night and early morning waking are some of the most common. Prof Amanda Richdale, from LaTrobe University talks with us about why sleep problems occur in autism. You can listen to and subscribe to the SCN2A Insights podcast via Appl…
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Simons Searchlight is an initiative of the Simons Foundation Autism Research Initiative (SFARI) that aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder (ASD). To better understand the work and current research of Simons Searchlight we speak to Jennifer Tjernagel, senior proje…
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Launched in 2006, SFARI is a scientific initiative within the Simons Foundation's suite of programs. SFARI’s mission is to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance.To better understand the work and current research of SFARI we speak to Dr John…
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Angel Aid provides relief for mothers of children with rare disorders, helping them learn tools of self-care, and be listened to without judgement. To better understand the issues facing carers and the work of Angel Aid, we speak to Cristol Barrett O’Loughlin Founder and CEO of Angel Aid. You can listen to and subscribe to the SCN2A Insights podcas…
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Lennox-Gastaut syndrome (LGS) is an epilepsy syndrome that can develop over time from childhood seizures that remain uncontrolled by treatments. It's common for children with genetic epilepsy to develop LGS which can then further exacerbate their symptoms. To better understand LGS, we speak to Dr Tracy Dixon-Salazar, Director of Research and Strate…
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The global coronavirus pandemic has brought significant challenges for us all, but particularly for children with developmental and epileptic encephalopathies. In this episode of SCN2A Insights we are joined by Heather Renton of SWAN and Sue Lenzi, Mental Health Social Worker to discuss how to help children manage through the pandemic. You can list…
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The global coronavirus pandemic has brought significant challenges particularly for those with children with developmental and epileptic encephalopathies. In this episode of SCN2A Insights we are joined by Heather Renton of SWAN and Sue Lenzi, Mental Health Social Worker to discuss strategies for carers during the pandemic. You can listen to and su…
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Want to better understand better how the COVID-19 pandemic may impact children and adults with genetic epilepsy and developmental and epileptic encephalopathies (DEEs)? Listen to these tips and information from Prof Ingrid Scheffer. This bonus episode of SCN2A Insights is produced by Genetic Epilepsy Team Australia for the benefit of those with gen…
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Global Genes connects, empowers and inspires the rare disease community. To learn more about Global Genes' mission and the support they can give organisations around the world we spoke to Kimberly Haugstad, CEO of Global Genes. Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A. Leave a review and subscribe via Apple Podcast…
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Having a child with SCN2A can have a significant impact on the whole family. To mark International SCN2A Awareness Day on February 24th we interviewed three parents about having a child with SCN2A. Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A. Leave a review and subscribe via Apple Podcasts. You can also find SCN2A Ins…
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Families can find it challenging dealing with the healthcare system when children with genetic epilepsy and developmental epileptic encephalopathies are unwell. To help identify needs and plan towards improving services, Genetic Epilepsy Team Australia convened a roundtable including families, clinicians and researchers. In this episode Kris Pierce…
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What is the relationship between loss of function SCN2A mutations and autism? How can studying SCN2A mutations teach us about cellular mechanisms underpinning autism? To help answer these questions we talk to A Prof Kevin Bender from UCSF Center for Integrative Neuroscience. Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A…
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Why are models needed to assess and develop treatments in rare diseases? What types of models are there? When are different models used? To help answer these questions we talk to Dr Snezana Maljevic from The Florey Institute for Neuroscience and Mental Health. Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A. Leave a revie…
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What should you expect when you attend a genetic epilepsy clinic? What happens when you need to transition from paediatric to adult care? To help answer these questions we talk to Dr Scott Perry, Medical Director, Genetic Epilepsy Clinic, Cook Children's Hospital. Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A. Leave a r…
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Antisense oligonucleotides (ASOs) are being developed as treatments for rare genetic disorders such as SCN2A. What are they and how do they work? To help gain a better understanding of ASOs and their role we talk to Dr Stanley Crooke, founder of Ionis. Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A. Leave a review and su…
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Genetic testing is complex with many different types of tests, and a range of terms used to describe the results of test, particularly in areas such as genetic epilepsy where research is moving so quickly. To help gain a better understanding of genetic testing and the results we talk to Dr Emma Palmer. Hosted by Kris Pierce and David Cunnington, pa…
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Children with severe developmental disabilities or autism often have difficulty with sleep which can not only impact on their sleep, but affect the whole family. To understand why this occurs and what can be done we talk to Assoc Prof Margot Davey from Monash Childrens’ Sleep Centre Hosted by Kris Pierce and David Cunnington, parents of Will, who h…
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Citizens United for Research in Epilepsy (CURE) was founded in 1998 by parents of children with epilepsy. Since then CURE has raised more than $60 million to fund epilepsy research. We talk with Dr Laura Lubbers, Chief Scientific Offier of CURE, about CURE’s work. Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A. Leave a r…
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